Gluten Frustration

Today it is snowing!  What???

I was driving home today from Ramona's doctor appointment, with snow falling in swirls around me (because it is blizzarding in mid-April!!) and city trucks cleaning up tree branches broken from the storm last week, and my mind is digesting the conclusion of the our most recent visit to the hospital. 

Clutching the steering wheel and sighing to myself.  Today I feel like a mom with children diagnosed with Celaics.  Most days I just feel like a mom that bakes more than average.  Most days I feel like a mom that has her shit together and is taking names and kicking gluten ass. Most days I am making lists of new products, budgeting for our favorites.  Today I just feel a little beaten by a disease.  Today I feel like maybe it rules the house despite our best efforts.

We went into the doctor this Thursday after spending most the night up with Ramona sick.  My man and I were taking turns with her in the bathroom.  When I could not be with her, it was because I had to be with her younger brother who woke up when we walked back and forth outside his room.  Till 2am she was whimpering and I felt frustrated.  Like, geeze, if gluten was a person I would be taking my anger out with a baseball bat on gluten's butt.

Ramona has these stomach aches more frequently than I like to think about, and as a result, frequently misses school due to them.  This week she came home early from school on Wednesday morning.  I was very proud of our school - she complained about a tummy ache and they called immediately, saying they figured it might be Celiac related.  They did not play her symptoms down, they did not hesitate.

So, Wednesday morning I dropped everything to get her, because Ramona never complains about pain unless she is truly in it.  And usually it is only a matter of time before she vomits or needs the bathroom once she complains about a stomach ache.  I was more afraid she would be vomiting in class if I did not hustle.

She spent the day home, resting, in pain, not particularly hungry and then the night in the bathroom.

I had it.  Oh, hell.  I have had it.

I made another appointment with the doctor.  I decided this is it!  I am going in with guns blazing.  I am going to advocate.  I am going to demand new tests.  I am going to say that my kid does not need to be in pain.  That obviously this isn't gluten!  Obviously we missed something else!  This might not be the first appointment I went in complaining about these aches and pains. 

Sometimes I have to ask myself what I am hoping to walk away with, but deep down I know exactly what I want.  I have this illogical hope that this time someone will say, Oh, we missed this very easy to diagnose and cure no-big-deal-virus!  That is why her stomach hurts.  Here is your miracle prescription.  May you never have to see your kid lose sleep over gluten again.  This will pass.  Here is your clean bill of health.

Well, I love our doctor.  I takes time to find a doctor you truly like.  I find this especially true if there are any special needs involved.  Our doctor listens, she asks questions, she does not hesitate to run tests and takes our frustration seriously.  Then she always gives it to me straight (and delicately).

We have some new tests we are running, along with a general blood count panel.  But, it comes down to this is most likely cross contamination.  Sigh.  I did have bagels for a morning playgroup on Tuesday morning, but I thought I had cleaned up.   I told the doctor this and then I stressed to her that this seems like a HUGE reaction to what must have been a crumb I missed on the counter top.

As I am driving home I keep hearing Ramona's doctor say, "Ramona might be much more severely sensitive than her sister.  Had she not already been on a mostly gluten free diet she might have been very sick." 

It is not that it did not occur to me, it is not that this has not been said to me before, but today it just keeps playing over and over.  I remember when Ramona got sick in Mexico, we almost did not go to the Chichen Itza.  But we sucked it up, barely making it and then her sister got sick on the bus.  Everyone near them worried they had a flu and all I could think was nope, this is just Celiac kids vacationing.  Sigh, sigh double fracking sigh.

Time to be grateful:
My kids are relatively healthy most the time.
There is a cure, it is called no gluten for us.
Ramona is feeling better and spent a lot of the appointment laughing - including when she got her blood drawn.
They have nothing more serious.
They are happy.

And I am grateful and I can see that in the over all scheme of things we are okay.  Sometimes though we need to decompress, validate our feelings and just say out loud, this sucks.  Sometimes.